adventures in family, faith, and Down syndrome

We don’t have a working computer these days, but I’m determined y’all. Starting tomorrow, we’re covering 31 surprises about life with Down syndrome. Please bear with me on the formatting.. and the typos.. and all of the joys that come from doing this without an actual keyboard.

If you have missed us, my apologies. I have missed you too! I have been so itchy to write, and really can’t wait to bust out of my technology-failure-induced-rut. There’s so much to say!!

We interrupt this regularly scheduled program on inclusion because, quite frankly, it’s Friday night and I can’t communicate clearly on that today. 🙂

Changing the Face of Beauty is a campaign to promote diversity in advertising for major retailers. It was started in the Chicago area by a fellow DS Momma, Katie Driscoll. She and her amazing team have gotten over 100 companies to commit to including models with a variety of disabilities in their advertising.

Target is the only major retailer to consistently use models with disabilities in their advertising. That’s sad.

ad·vo·ca·cy

noun\ˈad-və-kə-sē\

the act or process of supporting a cause or proposal : the act or process of advocating something

There are a lot of days that I wake up with a take-charge attitude toward advocacy. Most, even. When connected to a community who advocates for special needs, there’s always a cause to fight for. Some magazine posts an insensitive article about birth defects. A television program uses the R word inappropriately. Some crazy scientist tells me that my child is suffering. Yes, every day, without fail, there is a need for vocal campaigning. Every. Day.

Trust me, I’m all about fighting the good fight. I’ve never been one to shy away from (politely) sharing my feelings. If someone posts a link to a news story that isn’t supportive or encouraging, I do my research and then I’ll call someone out on it. I champion the causes of acceptance, love, understanding, empathy, and inclusion through words and actions. I am all for preaching to the choir, preaching at the devil, even preaching to a brick wall if no one else will listen.

Most days.

Some days (not many, but a few) I’m tired. I can’t fight every battle. I do think it’s incredibly frustrating that something happened, but today, I cannot fight. Because even if advocacy doesn’t sleep, sometimes I must. Without a break, it’s an effort that isn’t sustainable.

Thankfully, there is a huge network of moms out there ready to advocate for inclusion and acceptance when I can’t. Not just moms, actually. A community of supporters stand in the wings, picking up when I’m tired. I do the same for them. Together, united behind a worthy cause, our advocacy never sleeps.

One thing that I have noticed now, as the mom of a child with special needs, is the tummy flip-flops.

You know how sometimes, people say things or do things that cause a split second, literal gut reaction? Like when you see a cup of water about to fall over and you get a little flutter? Well, that happens to me more often now than it used to. A lot more. And for the silliest stuff.

Take for example, the palm-reading infographic that I came across on my Pinterest board today. I was looking through my pins for something related to animals to use with my Spanish 2 kids and found this:

You don’t have to know Spanish to tell that it’s a “cheat sheet” to reading a palm… which is something I don’t believe in anyway… but that’s beside the point. So, I’m looking at this infographic and suddenly, I remember Tessa’s straight little palmar crease (the marker that I studied and studied in the NICU) and I get a little flutter that says “Hey! Her palm is different! She probably can’t get her palm read! Can she??” And it’s not a good or bad or sad reaction, it just is.

Here are some other flip-flop moments:

-Listening to a mom tell me that her child would never get into college if she wasn’t selected for National Honor Society

-Any time I walk past a Special Ed teacher or the Vocational Ed classrooms

-Checking the “disabled” box for Tessa on our insurance forms

-Hearing kids called each other “dumb” or “stupid”

-Any mention of college savings plans.

Is this crazy?? A part of me thinks that I might be crazy, but the more rational side says that there is no way I’m alone in these sudden changes in perspective. I’m not bogged down by the feelings, they don’t upset me at all. They are just… there. Kind of like Down syndrome. It just is.

But if anyone else wants to tell me that they deal with the same thing, I’d love to hear about it. 😉

(Typing on an iPhone is still terrible. Would someone please tell my husband to stop goofing around on his Spring Break and fix the computer??) 🙂

Our marathon week of doctors and therapies left us with far fewer answers than we were hoping. As always, Tessa continues to progress, but we are still trying to get to the root of what might be making the feeding process so challenging for her.

Medical
Tessa is our little peanut, weighing in now at 11 lb 6 oz. It’s a good gain though, 2 pounds in a month. Overall she looks really great. She has been battling a cough for awhile, but it seems to be clearing up finally. Her clogged tear duct hasn’t resolved itself yet, but the idea of someone sticking a probe into a hole that tiny has me so freaked out that I’m massaging the heck out of her little gland every chance I get. So far, she’s pretty easygoing, so I can do this without much of a fight.

We also took Tessa to see an Ear/Nose/Throat (ENT) doctor for a variety of reasons, but mostly because she continues to make a gaspy, high-pitched squeak on a fairly regular basis. We had attributed this to the laryngomalacia (floppy vocal cords) that we believe she has, but want to be sure that she isn’t aspirating on her food when she squeaks. Unfortunately, the ENT was running late and we had to feed our child, which meant that he couldn’t stick the camera down her throat. Boo hoo. I wasn’t terribly disappointed to delay that experience!! He did notice that Tessa has some fluid in her ears and if it doesn’t resolve in a month with some nasonex, she’ll be having surgery to have tubes put into her ears. If she has the surgery, he’ll just do the scope at the same time. If not, I’ll have the joyful experience of trying to hold our squirmy worm still while he does it. Eek.

Physical and Developmental Therapy
The bobble head is still present, but Tessa is showing great improvement! She loves to look over my shoulder, so she practices holding her head up a lot. Just like Ellie, she loves to see what is going on in the world around her. We have gotten better at getting the arms to come to her center (midline), but it is still a battle. We have expanded our use of kinesio tape to be used not just on her abs, but also on her chest/pectoral muscles. It looks goofy, but it seems to be be working well to help her lift her head and chest up. Now that we are teaching her to use the correct muscles to roll (not the head and neck), she can get up onto her side pretty well, but does not flip. This might seem like she has regressed, but it’s actually much more important for her to use the right muscles! We also have a pair of “hip huggers” for Tessa to wear. They are tight pants with the legs sewn together (like a mermaid fin) so that her hips align better. Unfortunately, the wiggly legs have found a way to wiggle right out of the pants, so our PT is working on making a new pair that she can’t get out of!

Developmentally, we are getting lots of smiles and coos from our sweet girl. She has been very vocal for the past couple of weeks and I am loving it!!! While her absolute favorite is still the ceiling fan, she mostly prefers to look at people and looks for faces to match the voices that she hears. We are now working on getting her to track 180 degrees (follow an object all the way from left to right) and would like to see her show more interest in grabbing objects. The rough estimate is that she is about 30% delayed right now. Not huge!!

Speech
On a positive note, I can get Tessa to eat about one ounce a day in an upright position. One ounce out of about 25 per day sounds terrible, but please understand that two weeks ago, just putting the bottle in her mouth while upright caused serious gagging. I’ll take the small victory.

I’ve been back to work for two days now. It was so nice to have such a warm welcome back from my students and coworkers. They were actually so nice that my perfect April Fool’s Day trick was a total flop!! I had planned to tell my classes that Tessa had a really bad day at day care on the first day and that I was going to take the rest of the year off to be with her. Every time I tried to work up the courage to joke with them, I couldn’t do it!!! It really is good to be back, but I do miss these girls (and guy!) while I’m bringin’ home the bacon…

Occasionally, when I find myself veering off the healthy eating path, I do a slightly modified week of this crazy diet (found here) to help get me back on track. I have found that it really helps me cut a lot of cravings and brings me back on track.

However, day one is brutal. 24 hours of nothing but fruit. Originally, I thought this sounded glorious!! I love all kinds of fruits! What could be so bad about a day full of fruit?

Except now it’s noon and all I really want is a pickle. Or lettuce. Heck, I’d even take a brussel sprout. Anything but sweet! The day just makes me really cranky. Which makes it a perfect day for me to write vent about the financial future of my daughter and the ABLE Act.

This is long and complicated, but as the law currently stands, when Tessa is an adult, she will have to stay “poor” in order to continue to receive any services that she may need. How poor? She will not be able to have “resources” of more than $2000 or she will no longer qualify for things like Medicaid or Supplemental Security Income. Under the law, she cannot have a college savings account, real estate, a retirement fund… the list goes on. If John and I die before she does, we cannot leave money in her name to provide for her future. There are some loopholes here, but with the advances that have been made in understanding the development of children with Down syndrome (and many other disabilities), the system in place is antiquated and needs to be replaced. These children can go on to higher learning. They can save for retirement. They can do many, many things that we may not have thought possible!

Current legislation aims to make those changes. A few days ago, I posted a link to a petition to urge the US House of Representatives to pass the ABLE Act (here’s the link) so that Tessa could potentially save for her own future. And here is where I get frustrated.

Many, many, many people that I know, love, and appreciate, signed the petition and I am forever grateful that they have taken the time to do so. The goal is 300,000 supporters and I’ve been watching for a week as the number has slowly ticked upward. We are still short a little over 65,000 signatures to reach the goal. And last Thursday, after the controversial Women’s Figure Skating Olympic medals were awarded, a new petition to remove anonymity from figure skating judges attracted over 2 MILLION supporters in less than 24 hours.

I’m sorry, what?

Which is the lesser cause here??

Admittedly, I probably would not know anything about the ABLE act if it were two and a half months ago and Tessa was not here yet. I would still support the darn thing, if I knew about it, but there has to be some way to make people aware of the bigger issues. This act affects more than just people with Down syndrome. It’s for all individuals with disabilities (or as we’ve come to call them in our home, different abilities). It matters. Certainly a lot more than some silly figure skating competition.